The Strategy Disconnect in HCBS Advocacy

Disconnecting

I am part of a large work group negotiating a rough consensus about how Michigan should implement the CMS HCBS Community Services Rule. This set of requirements for services to people with disabilities through Medicaid is the most far reaching effort to change the quality and impact of supports since the closing of institutions in the 70’s.

What makes the HCBS Rule so revolutionary is the guiding principle of its implementation: The life possibilities and experience of persons receiving supports should be the same as the possibilities and experience of people without disabilities.

The implementation of this rule will occur over the next few years, and there are many, many practical issues with altering the way supports are currently structured, planned, funded, and implemented.

There is a disconnect between the way a civil right is supposed to operate and the way that we actually go about realizing that right in practice. The CMS HCBS rule highlights this disconnect very clearly.

Civil rights were originally developed as an expansion of the notion of property rights. It appears as though this had to be done in order to make civil rights palatable to American courts. Broadly, property rights were intended to protect contracts (and estate inheritance, a kind of contract between generations). So the focus was on the specification of the meaning of language in a contract, and the preservation of the property interest from fraud.

And, in fact, much of civil rights advocacy whether in courts, fair hearings, IEPs, etc. is an effort to negotiate a final version of a contract (between family, student, and school; between landlord and person with a disability, and so on).

But the meaning of a civil right to the person who “has” it and the meaning of that same right in an ongoing advocacy process is different, and it is this reality that leads me to describe the HCBS implementation process as having a disconnect.

I realized this disconnect when it became apparent that many stakeholders in the implementation process for HCBS view the implementation as a negotiation over terms, albeit a new one (or as it is often called by providers, a “fad”). Their ideal outcome would be a negotiation that allowed them to behave and be paid in exactly the same way they do now.

But, from the perspective of a person who might benefit from the implementation, the terms have a very different meaning. The rights being discussed are only incidentally about what providers can no longer do in restricting the person’s access to the full community. HCBS implementation has the ability to open up an unrestrained vista of choice that maps to the one that all citizens expect.

All of the counter arguments to such an opening of possibility are arguments that devalue the ability of people with disabilities to benefit from such possibilities (hiding the true agenda of maintaining current payment relationships and workflows).

The fact that there is a larger “meta” strategy underlying HCBS implementation to open up these possibilities doesn’t change the requirement of negotiating as though we were creating a contract for how supports will be done. But it does re-frame what is at stake. All of our lives are a mixture of what we would choose to do if a broad range of possibilities were available, and how others work to restrict our choices to the ones that benefit them rather than us. The disconnect in the meaning of this negotiation underlies the long struggle of people with disabilities to realize their self-chosen lives and the efforts of others to stop that.

We will see how far the HCBS implementation reaches toward that goal of equity in life possibilities. But that common goal will remain the harbinger of a truly free disabled community, and nothing less will ultimately be acceptable to all in our community.